If you could say to a Dr....

[K9wife]

I have mentioned here several times how strongly I feel about the medical world, including some of our doctors, is just so "in the dark" about IC and its consequences. I would love to have copies of actual thoughts that you may give me permission to share with the Doctors in my county, when I present them the info re: the new Support Group we are trying to form here in Northern NY state. If you could say anything to these doctors to help me get the point across to them as to what your daily life is like, what sacrifices you and your families have made, what meds/treatments you've tried, and your general experience in the medical world, would you share a note or two and give me permission to share it with Drs here? I think it is important for them to see that this disease affects all ages, careers, gender,etc, don't you? (I would leave out all personal info, of course) besides allowing you to vent, it will undoubtedly help some IC sufferers who think they are probably crazy, because their doctors have convinced them of it! I appreciate it so much, and I'm speaking for the others we have not yet reached, I'm sure. You can either post it here, or email your message to jmonnat1@twcny.rr.com Thanks!

[Portia17]

Hi k9wife

Yes you can start by saying that urologists (well mine) has never educated me after i.c. that is why I am getting another one and that will be uro number 3. All he did was give me elmiron and set up dmso treatments. I asked for pain releif he said oh no I can't do that I might get my license taken away.

Also, how about all the times we are suffering before a disagnosis about ic and the doctors or nurses do not care how long you have to wait for your first appointment. suffer for 3 weeks and lose income because I can't work. Then they send u this great package in the mail to fill out before you go there and how welcome you are and we are so glad to have you as a patient (meanwhile I am dying in pain filling out these forms and what do they care) and then after you get there most of them are not nice at all so I wound up in the emergency room because I had to wait another 2 weeks after my biopsy and then some jerko doctor in the emergency room said I was a drug seeker. Well when I got my medical reports I saw that and reported him and wrote a letter but I am sure nothing was done as THEY ALL STICK TOGETHER.

Also, how about when you think you have a u.t.i. and the urologist tells you oh the next appointment is in 3 days and won't give you nothing over the phone in the meantime so call my primary in the middle of the night and he is not sure what I have but does call in antibiotics to my 24 hour walgreens so I dont have to suffer even more.

How about when your urologist who is a "so called specialist in i.c." diagnosed me and should know the damn pain I am in and yet still would prescribe pain pills or fill out my disabiliity papers at work. MY PRIMARY DOCTOR AND PAIN MGMT DOCTOR HAD TO DO SO.

you should tell these urologists that a lot of us dont go there anymore an not because we like them and are doing well it is because we have finally found a urologist who cares about me after 3 or more tries and i now have a pain mgmt doctor who I can call anytime and email her and she takes care of me.

If you are going to be a urologist and oh how u say u specialize in i.c. than damn well act it and give the patient whatever he or she needs cope and somehow have a functional life otherwise get out of the medical field because you are not worthy.

Get a load of this my urologist's wife has i.c. and he treats his patients like crap. I wonder how he treats his wife. Well after Monday he is history

K9WIFE - I AM NOT YELLING AT YOU AT ALL. I STARTED WRITING THIS AND WAS WRITING IT LIKE I WAS WRITING IT TO THE MEDICAL FIELD AND I THINK IT IS A GREAT THING YOU ARE DOING AND WILLING TO HELP YOU ANYTIME

HUGS

[K9wife]

BRAVO!!!!!!!! And many more.........! Thanks!

[Regina06]

Thanks

[melanie626]

K-9 wife-
My biggest reminder to those URO's would be that just because IC is frustrating to treat, doesn't mean to ignore it, or dump it on someone else. Take their own frustration and multiply it 10 fold, because that is what the patient feels like. I would ask them to share with their patients what they will/ won't do and then help facilitate with other members of the team (ie..pain mgt, primary) why they don't do "X, Y, Z" but share with the other members of the team that those things are still important to treat. I am a Nurse Practitioner with my masters and I have never felt so abandoned recently...and I know the system...imagine how the average patient feels?
You can use my name-
Melanie H. RN, MS, APNP 33 yo in Madison WI- IC officially for 3 years, really since I was 6 y.o-

Good luck

[melanie626]

Oh- funny thing to add on, I remember I had a friend a few years ago who was my age, a General Surgery resident. I was sharing my bladder woes and she said to me "you don't want IC, all those patients are nuts"- pass along that that mentality is not something to be passed along and as Uro's they have the power to change it!

[K9wife]

I certainly WILL pass that on....are they being taught that at med school or what?!? Thanks for the input!

[Babs RN]

Melanie,
I have been a nurse(critical care and ER)for almost 13 years and know the system as well. I feel even more abandoned at times as well because I hear the behind the scenes chatter at the nurse's station, and the like. K9wife- any of our patients with chronic pain resulted in a whole bunch of snickering and judgement. I was told I was a better drug seeker because I was able to manipulate the doctors I knew and ask for things because of my knowledge of pharmacology. In fact, I will not set foot in the ER here on post(my hubby is in the Army)because they have told me flat out, they will not treat my pain or anything to do with my bladder or kidneys. So in an emergency with my hubby in Iraq, I have to find someone to watch my daughter and go 35 miles to the nearest hospital. It is frustrating because I am the only person on post with IC and my initial doc was so caring and understood the disease quite well. Once he left for Iraq, I was told IC does not cause severe pain and that I was making it up. I have had to fight tooth and nail for 6 months to have any quality of life. So to all the docs, leave your judgement and preconceive old school notions of pain mangagement. Haven't you heard that pain is the fifth vital sign. DO some research and help your patients have a quality of life. Treating someone with a documented medical condition will not cause you to lose your license, you know that and I know that.
You can use my name too.
Barb RN, BSN, CEN, CCRN, 34 years old

[DanaW]

You gals have to read everything on this site I found!! Here is the link:

http://www.painlaw.org/nontreatment.html
This website it all about untreated pain! And, what we can do if the Dr. refuses to help. There are actual steps you can take to report a Dr. for not being ethical. If they don't want to treat your pain, they have to find someone who will! Let me know what you all think, ok?

[DanaW]

Here is one more website that I found that you all should read:

http://www.paincare.org/pain_management/perspectives/patients/depression.html

These are actual chronic pain sufferers and their stories. Dana

[Babs RN]

Good website, Dana!

[melanie626]

Barb-
I agree....I am currently hoarding my pain meds because my SO and I will be moving and I don't know to where, but untill I get established, I don't want to be without. How sad is it that we have to do stuff like that?

Melanie

[Babs RN]

Melanie,
It is sad and you're absolutely right. There are days I choose to suffer rather than running out of meds. Although the doc I am seeing now as a primary is very willing to work with me and pain relief, I have been so burned by having my pain well controlled only to have that ended because a doc thinks that day that I don't need pain control anymore that I live in fear that eventually this doc will give up too. The fact that the Army doctor sent a letter to the pain management person ahead of me who then turned me away makes me cringe. If I was not a health care professional, I wouldn't know the underbelly of patient care but the fact that I do and cannot have my pain adequately cared for as my husband serves in a warzone, and as a veteran myself(I was an Army nurse)makes me question my participation in such a judgemental, backwards system.

Hugs,
Barb :grouphug:

[theoutlaw77]

I think it is so terrible that so many doctors are so uneducated in IC. It took me so long to get a diagnosis, and to find out what was wrong with me. The whole while thinking that maybe I was crazy!! After numerous urologists who did not have a clue, I am currently being treated by a gyn for my IC!!!! I am also now seeing a pain mgt. dr. At first I had a lot of conflicting emotions about having to take pain medication daily, but now that I am getting my life back (and a quality of life as well,) I see that it is ok to take the meds because it is needed! It is terrible that so many have to suffer in pain because of the ignorance of these doctors!

[Babs RN]

I've always said I should go back to medical school and become a urologist. I would be ancient by the time I would open a practice but with my experience and many others it would certainly be nice to make a difference. I have this dream about opening a urology health center with a pharmacy and pain management doc on site, surgery center on site, IC friendly gift shop(food, heating pads,etc) and meeting rooms for support groups with ergonomically designed chairs and tons of bathrooms! Maybe if another doc sees this they can take some ideas and apply them to their own practice...sigh...we can dream can't we?

Hugs,
Barb :grouphug:

[Ginny]

You could hire people from this list to work in your office. Even the person answering the phone could make a difference in someone's life with IC.

Ginny

[Babs RN]

That's for sure. A non judgemental office where people receive quality, quick and compassionate care. Hmmm :bonk:

[ICLori]

I love this thread, I love reading everyone else's replies.

And when I try to draft something to say to doctors - I just end up in tears. And end up thinking, what good is it, they'll never listen to us anyway.

At least one million people in the U.S. now have this disease. Researchers are finding signs of this disease in roughly 23% of all women they are testing, women just walking in off the street. Most urologists who study this disease believe the number of active IC cases (bad enough to require treatment) number 7 or 8 million in the U.S. alone. And the numbers are rising.

Doctors, when will you stop treating this disease as if it were exceptionally rare, not a disease you ever expect to see in your lifetime? It is now more common than Parkinson's disease - over 1 million diagnosed cases in the U.S. alone. And urologists who work with this, believe the number ought to be 7 or 8 million diagnosed cases. Researchers are using words like "pandemic" to describe IC in the female population.

Urologists/urogyns - when will you learn something about this disease, how severe it can be, the treatments for this disease - instead of simply saying "well, that's not really my field, I really don't know anything (or care to know anything) about IC." Where can the 1 million, 7 million, 8 million, 50 million or so of us with IC (depending on which statistic you read) go for help with IC if not to you? Why is IC "not your job?"

Doctors, when will you believe us when we say that we have pain, maybe on a daily basis? When will you believe us when we report adverse reactions to medications, when we report that certain medications increase our bladder pain? Why do you label us crazy or liars when we try to tell you what we are experiencing?

Your profession has let us down very badly in the past. Will you continue that not-so-honorable tradition of ignoring IC patients, calling us crazy, undertreating our pain, etc.? Or will you do what you said you would do when you assumed the responsibilities of a physician - help to heal your patient, help to alleviate their suffering?

Blessings, Lori

[diane57]

Lori, I LOVE that letter. Wish it could be published in the Urologist Times or whatever the urologist trade journal is. I haven't been keeping up with the statistics on how many people might have IC, and that part is really fascinating. I hate to wish this condition on anyone, but in a way I hope many many people do get diagnosed with it, that will be the kick in the pants to get the big drug companies (who I think have profit as their number-one motive) into gear with research and development. And I wish there were more celebrities who would fess up to having IC, there have to be some who have it, but I think they keep it very quiet out of fear it will hurt their career. (That's what I've read before on the boards...)

In the latest newsletter from the Interstitial Cystitis Association, there was an article about an author (can't remember the name) who won the National Book Award in 2002, and how he's had IC for 10 years, and his experiences with it. He said he was treated horribly as he searched for a diagnosis; he went to many ERs complaining of pain, and once was told that he should check into the mental ward of the hospital, since they could find nothing wrong with his bladder, and clearly his "pain" was a manifestation of conflicts in his personal life blah blah. Finally he went to about his 4th urologist, who said, "Well, you know, I can't find anything wrong. Now I have heard of this condition called interstitial cystitis, but I really don't think it's real, because it's something that women complain about and you know how women are (!!!!!!!!). But my colleague for some reason does think it's real, so maybe you should go to her..." He did go to the colleague and was finally diagnosed and started treatment. He said the whole thing gave him great empathy for women and the way our problems are ignored or labeled hysterical. It was a great article, and I just wish more famous people would talk about IC.

[theoutlaw77]

I am really hoping that when the IC Awareness bracelets come in, it will prompt more people to do more research, become aware of IC and what it is all about...Here is a little poem that I composed that I plan on handing out when people ask me about the bracelet (so I don't have to explain myself over and over.) It is kinda cheesy, but...

IC is a strange disease, for its symptoms you can not see
Unfortunately, there is no cure for what is going on inside of me.
My bladder does not have a protective lining-
which can lead to quite a bit of whining.
As I am often in a lot of pain,
and go to the bathroom so much it makes me feel insane!
I am glad that you asked about my bracelet because that means that you care.
And, the first step in finding a cure is making people aware!

I posted it on the thread about the bracelets also, but thought that this was a good place to put it also!

[Ginny]

I agree that all the posts should be sent to Urologists. I also think we should send some "thank you's" to the Pain Management and Primary doctors that do give us the pain medication. I always want to do it but never put it in words.

[Regina06]

Hi Ginny

We must think alike because 3 days ago I mailed my pain management doctor a Thank you card ; )

outlaw - I loved your poem. It should be placed all over. It is great

[theoutlaw77]

regina06- thank you for the compliment. Feel free to use the poem also if you wish!

[PamIvanicki]

There is a female professional golfer named Terry Jo Meyers who has I.C. and is a spokesperson for I.C. Maybe she can bring this disease into the forefront.

http://www.usatoday.com/life/health/doctor/lhdoc195.htm

I was so lucky to have a diagnosis within 1 month of my symptoms beginning, but if I hadn't repeatedly brought up I.C. to the 2 uros I saw, I would probably still be undiagnosed. The first uro I saw said he did not think it was IC, as it "just does not present this way." But, everything I was reading about the disease, is that it pretty much presents different in everyone.

The second uro I saw said the same thing. I pushed for a cysto and more studies, but it wasn't easy. It took several crying phone calls and visits to convince him I needed help. I have a working diagnosis of I.C. now, but there is a possibility it is endo. After surgery on Monday, I will hopefully know more. I do feel better, however, on the Elmiron and Hydroxyzine.

The first time I came to this site, I was petrified. I received very supporting and reassuring e-mails and posts from lovely wonderful women on this site. I still felt lost and was certain I would never feel better, mentally or physically. I am still scared, but the information I have learned on this site has been invaluable. Thank God for this site.

[K9wife]

These are GREAT!!!!!!! I have already showed many of them to my co-workers within the office and hospital setting.....keep them coming- and doesn't it feel great just to be able to get these frustrations out in the open, without fear of judgement or criticism of our peers??!!?? Looking forward to more!